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I Want My Independence Back

My name is Melissa (Mel) and recently I have found myself to be isolated and wheelchair bound, with limited access to public transportation in my area. I am seeking help with getting a wheelchair transportation vehicle, so that I can work towards establishing my independence and getting my life back.
Looking back at my medical journey, life was challenging before I even knew of my diagnosis of Ehlers Danlos Syndrome with hypermobility (EDS). I was born in an orphanage, in the third world country of Vietnam, in the middle of the Vietnam war. I was extremely fortunate to have been adopted into a family, by two amazing parents and brought to the United States at four years old. However, when I arrived, I came with malnutrition and various other physical and mental delays and did not speak or understand English at all. It was a tough adjustment and I struggled with all aspects throughout the remainder of childhood, never really catching up. I was sick all of the time throughout childhood, but doctors could not figure out the cause, which led to having to see a string of specialists, who could not provide answers. My poor mother had to deal with me being ill all of the time and also being extremely underweight.
I was diagnosed with EDS at the end of my thirties or the beginning of my forties. This gave me information about what that means for my health and future. I went to a conference to learn about Ehlers Danlos Syndrome because it is a genetic disorder that can be invisible, in that we can appear healthy, while inside our body is failing slowly. Currently, there is no known cure or remission for EDS. EDS is known to cause a host of other illnesses. Along with EDS with hypermobility, I also am diagnosed with Type II Diabetes, Mast Cell Activation Syndrome, Fibromyalgia, Tracheobronchomalacia (collapsed trachea), Dysautonomia, Arthritis, Irritable Bowel Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), Anxiety, Bipolar Disorder, Depression and Adult ADHD.
Because this is a connective tissue disorder, wherever we have connective tissue in our bodies, the illness (EDS) is unable to make the protein to make collagen, which keeps our connective tissue together. My EDS with hypermobility continues to progress, to the point that I am now dependent on others to help me in everyday life, which therefore isolates me. My community also offers very limited access to handicapped accessible public transportation.
In order to build independence and not be reliant on others, I need a vehicle that can transport my electric wheelchair. I am dependent upon my electric wheelchair to get out of the house. Otherwise, I am fairly housebound. The last thing that I want to do is ask for help because it is very uncomfortable for me. However, at this point, I find it necessary so that I can live my life and not succumb to my illness. Any help that anyone can offer to support this, would be greatly appreciated.
Family and friends of Melissa Fischer are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

Updates (1)

September 28, 2021

I want my Independence Back:
My name is Melissa (Mel) and recently I have found myself to be isolated and wheelchair bound, with limited access to public transportation in my area. I am seeking help with getting a wheelchair transportation vehicle, so that I can work towards establishing my independence and getting my life back. Looking back at my medical journey, life was challenging before I even knew of my diagnosis of Ehlers Danlos Syndrome with hypermobility (EDS). I was born in an orphanage, in the third world country of Vietnam, in the middle of the Vietnam war. I was extremely fortunate to have been adopted into a family, by two amazing parents and brought to the United States at four years old. However, when I arrived, I came with malnutrition and various other physical and mental delays and did not speak or understand English at all. It was a tough adjustment and I struggled with all aspects throughout the remainder of childhood, never really catching up. I was sick all of the time throughout childhood, but doctors could not figure out the cause, which led to having to see a string of specialists, who could not provide answers. My poor mother had to deal with me being ill all of the time and also being extremely underweight. I was diagnosed with EDS at the end of my thirties or the beginning of my forties. This gave me information about what that means for my health and future. I went to a conference to learn about Ehlers Danlos Syndrome because it is a genetic disorder that can be invisible, in that we can appear healthy, while inside our body is failing slowly. Currently, there is no known cure or remission for EDS. EDS is known to cause a host of other illnesses. Along with EDS with hypermobility, I also am diagnosed with Type II Diabetes, Mast Cell Activation Syndrome, Fibromyalgia, Tracheobronchomalacia (collapsed trachea), Dysautonomia, Arthritis, Irritable Bowel Syndrome, Postural Orthostatic Tachycardiac Syndrome (POTS), Anxiety, Bipolar Disorder, Depression and Adult ADHD. Because this is a connective tissue disorder, wherever we have connective tissue in our bodies, the illness (EDS) is unable to make the protein to make collagen, which keeps our connective tissue together. My EDS with hypermobility continues to progress, to the point that I am now dependent on others to help me in everyday life, which therefore isolates me. My community also offers very limited access to handicapped accessible public transportation. In order to build independence and not be reliant on others, I need a vehicle that can transport my electric wheelchair. I am dependent upon my electric wheelchair to go out of the house. Otherwise, I am fairly housebound. The last thing that I want to do is ask for help because it is very uncomfortable for me. However, at this point, I find it necessary so that I can live my life and not succumb to my illness. Any help that anyone can offer to support this, would be greatly appreciated.

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Guestbook

October 3, 2021

I greatly thank those who have helped me on this medical journey.

Melissa (Mel)

October 2, 2021

Melissa, I hope that more independence and mobility is in your future. It was a pleasure to get to know you last year through FPBUU. Best, Irie

Irie Mullin